Many of us may eventually play a role in caring for aging parents, and helping them navigate the healthcare maze. When the prognosis is months rather than years, hospice care is often the best choice, and can help patients achieve the best quality of life. Hospice does not seek to hasten or postpone death, however, studies show that people who receive hospice care live longer, even experiencing joy in the final stage of life. Care should be sought sooner rather than later in the course of a serious or terminal illness—not just the last days or weeks of life –to benefit from the full realm of services.
Popular misconceptions may drive patients and their caregivers away from taking advantage of this unique philosophy of care. Here are some facts to help dispel some common myths that cause hesitation or prevent people from getting the care they need. Here are a few of the most common fallacies about hospice care along with the facts:
Myth: Hospice is a place.
Fact: Hospice is a philosophy of care. While many hospices do have inpatient facilities, most hospice care is delivered wherever the patient lives, whether it’s in their home, at a hospital, nursing home, assisted living or group home.
Myth: Hospice means giving up hope.
Fact: Hospice assists individuals as they transition from hope for a cure to hope for living life fully. Hope includes being as comfortable as possible and setting realistic goals for the future.
Myth: Hospice is only for cancer patients.
Fact: Hospice is available to anyone with a serious illness, regardless of age or diagnosis. Care is provided to meet the needs of those with cardiopulmonary disease, dementia, renal disease, AIDS, Alzheimer’s, and other terminal diseases.
Myth: I cannot receive curative treatments while receiving hospice.
Fact: Patients are free to seek many types of treatments while receiving palliative or hospice care.
Myth: The only outcome is death.
Fact: Some patients improve with the supportive care of hospice staff to the point that hospice is no longer suitable. Many hospices have programs that assist in continuing care and wellness plans when they are discharged. They can be re-admitted to hospice if necessary.
Myth: I can’t keep my own doctor.
Fact: Patients can keep their own doctors, even after admission to hospice care.
Myth: Only a physician can refer to a hospice program.
Fact: Anyone can make a referral.
Myth: Hospice is only for the last days of life.
Fact: Most people wait too long. Once it is determined that life expectancy is months rather than years, hospice is available. To fully benefit from hospice, patients and caregivers should seek care early.
Myth: Hospice is expensive.
Fact: Hospice care is billed to Medicare, Medicaid and commercial insurers. Most not for profit and some for profit hospices, rely on philanthropic dollars to insure that no one is turned away regardless of ability to pay.
Family and friends experience a variety of grief reactions after the death of a loved one. All hospices offer bereavement services to hospice families for more than a year after the death. Services vary, but often include one-on-one support through visits and phone calls, specialty support groups, memorial services and educational programs.
Talking about how we want to live as we approach death will ease the strain for loved ones. Organizations such as The National Hospice and Palliative Care Organization (NHPCO.org) or online resources such as Caring Connections (caringinfo.org) provides people with information resources, brochures, how to find a hospice, ways to plan ahead, help for caring for a loved one, living with an illness or grieving a loss.
Jane Van Bergen is director of communications and public relations for Hospice of the Western Reserve. She has more than 20 years in commercial and retail marketing communications, media relations and nonprofit strategies. As an entrepreneur and past owner of a local business, her background on both sides of the desk is a valuable asset to developing public awareness of Hospice of the Western Reserve. Prior to joining Hospice of the Western Reserve in 2002, Ms. Van Bergen was the public information director for the Diabetes Association of Greater Cleveland, where she gained experience in funding, sponsorship, brand positioning, special events, public policy and other communications activities. Before entering public relations, Ms. Van Bergen was a co-owner of an art gallery with stores on both the east and west side of Cleveland. She also taught art at Regina High School for girls. Jane has presented locally and nationally on trends, issues and challenges to branding hospice and palliative care to the community. She resides in Cleveland Heights with her husband, Tony Zupancic, a professor at Notre Dame College. She has two children.